Radiation necrosis

Has anyone had necrosis? I’ve had swelling since my first radiation treatment last March. No one listened to me so I didn’t start steroids till November when I finally ended up in the hospital. Now I’ve been on them ever since and every time we lower the dosage the swelling comes back but worse.
I had to have 2 radiation treatments cause my avm is pretty big. My doctors told me that the second treatment would be better and I’d feel better after and have no swelling etc but it actually got to the point that almost 1/4 of my brain was swelling.
I’m wondering if I maybe have radiation necrosis? I just can’t understand how it’s possible to have brain swelling for this long and for it to not go down and just keep getting worse.
It’s caused seizures, vision loss, motor skills deficits etc and I just don’t get it.

I had an MRI to check if my avm has shrunk a few weeks ago and he said that where the first part they treated is, it’s “empty”. I don’t know what they mean by empty.
I don’t think I can upload a picture on here but the part they’re talking about is now black in the middle and surrounded by white. I also still have swelling so maybe that’s what the white is. My doctors aren’t straight up with me cause they “feel bad” and feel they’re to blame for everything going on. I just moved to a different country so I have no idea when I’ll have a new neurologist/neurosurgeon so not sure where to turn to.

You sure have had quite the battle. I’m really disappointed if your Drs are not being completely up front and direct with you, that is completely unacceptable. I haven’t experienced necrosis but did have some swelling about 6 months post gamma knife treatment but o to the point of requiring steroids. I was fortunate.

Hopefully another site member is able to provide some info for you. We had a member here who had a real battle with swelling after Cyber Knife @amcoffey. I have included one link below. I know she was successful in dealing with the swelling but I couldn’t seem to find that portion.

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Glad to have you here! Read your post & info - that def sounds like a battle. And, not having the neuros helping has to be a battle of its own.

I have learned this myself - you can only do so much research on your own until you’re in you’re neurosurgeon’s hands

I know I’m not much help, but I wish you the best.

Thank you! I’ve read her story before and my surgeon did talk about Avastin before but seemed to forget about it and it just never came up again? Now that I’m in the UK I’m going to look in to either Avastin or Hyperbaric oxygen therapy. Thank you again for your response

Thank you, I appreciate it!

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I have just recently had the same situation occur. This past Friday I had my first seizure and I’ve previously had an embolization and 3 radiations done, most recent was January. My avm shrunk about two centimeters from it but now almost half my brain has swelled up. When I got to the hospital first they told me that they suspected a brain bleed, then they informed me I have swelling and edema from the radiation. Now I’m on steroids for 2 weeks to help the swelling go down as well as edema go away. I feel as if doctors are sure what causes these issues and are just winging it. But I hope you have a speedy recovery and a solution comes up. Doing your own research and finding a new doctor may have to be the way out too. Not everyone knows how to deal with our case.

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Oh no, sorry! :frowning: I hope your swelling goes down and you feel better.
My plan is to get more opinions, a good neurologist/neurosurgeon and some straight answers. I think it’s hard cause everyone’s case is so different, and my doctors were always so mind blown by me that I don’t think they even knew what to do sometimes, which is frustrating but what can you do.

Hyperbaric oxygen therapy really, really helped me. I had a pretty big AVM and at its worst the radiation necrosis was about 4 times the volume of the original AVM. I still have some permanent damage from radiation necrosis but hyperbaric oxygen therapy turned things around and fixed it. My radiation oncologists considered avastin but I was able to stabilize after 2 series of HBO2 therapy, first series of 60 treatments, and then another series of 40 treatments when the swelling started up again. Best of luck with your journey. Hang in there - this is rough.

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I’m hoping for either Hyperbaric oxygen therapy or avastin! I just got my medical records and they confirmed necrosis so hoping I can see a neurosurgeon soon. I don’t think I can do the Hyperbaric oxygen therapy though cause I have something wrong with my kidneys so gonna push for avastin! Thank you for sharing with me

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Actually Avastin I’m told puts more strain in your kidneys since it’s a chemo drug and clears through your kidneys. I had this discussion with my radiation oncologists because my mom went in kidney dialysis in her early 50s so I have a strong family history of kidney failure. But definitely a question for your nephrologist. If anything my creatinine numbers got better when I was doing HBO2 therapy I was told because HBO2 is the gold standard treatment for edema. But that was only my experience. Please check with your doctors!

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Also I had better luck working through my neuro radiation oncology team than the cerebrovascular neurosurgeons. Radiation therapy isn’t really a scalpel surgeon specialty. My AVM is officially obliterated as of 4 years ago and now the cerebrovascular neurosurgeons don’t want to follow me - my primary docs for follow up are my neuro radiation oncology team. So don’t be surprised if the neurosurgeons aren’t too interested in treating radiation necrosis. You might have better luck with neuro radiation oncology.

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Good to know, thank you!!
The only reason I had a neurosurgeon back in Canada was cause he was the founder of the gamma knife unit there or something. Now that I’m in the UK I’ll push for the best person to treat me!

I right now have brain radiation necrosis. MyAVM an aneurysm are in my occipital lobe. On September 23, 19 days from now I’m having a cerebral angiogram with Avastin put into my brain prayers are appreciated. If the Avastin into my brain doesn’t work to help with the necrosis and develop more blood vessels, and he said he has to open me up and remove the necrosis. My ATM an aneurysm are still there but he’s not worried about them he said. Any advice anyone been through this? I had gotten tunnel vision and this is my third round of steroids dexamethasone, third round of really high insulin 20 mg three times a day, plus an insulin for 24 hour period.

That’s supposed to say a VM, I can’t see well enough for the high sugar levels in the vision loss on so I have to use the microphone. Sorry if anything came out wrong

AVM with high blooded low aneurism


I just want to send you my best wishes.

I also noticed in your bio your reference to being a “mamaw”. Did you know that the Norwegian word for grandma is “mormor”, I think exactly as you are saying? Specifically, “mormor” means mom’s mom. …Just a random share! :rofl:

Very best wishes,


Hi there! So sorry i havent logged in, in awhile. I have been through exactly what you are going through to a T. Feel free to private message me with any question or just want to chat. I’ve also talked to several survivors on the phone if you prefer that. First step I would suggest is to absolutely find new doctors who can look at your scans seriously, the necrosis will have to be delt with. In my experience it did continue to get worse as well until i participated in a clinical trial

Thanks, great to hear from you! I hope all is well, John.

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